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Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

Abstract Background Sickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living wit...

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Furkejuvvon:
Váldodahkkit: Mariangela Pellegrini, Subarna Chakravorty, Maria del Mar Manu Pereira, Beatrice Gulbis, Catriona Gilmour-Hamilton, Sandy Hayes, Mariane de Montalembert, Baba Psalm Duniya Inusa, Raffaella Colombatti, Noémi BA Roy
Materiálatiipa: Artigo
Giella:Inglês
Almmustuhtton: BMC 2023-11-01
Ráidu:Orphanet Journal of Rare Diseases
Fáttát:
Sickle cell disease
Patient education
Patient therapeutic education
Public patients involvement in Research
Patients workshop
International congress
Liŋkkat:https://doi.org/10.1186/s13023-023-02951-8
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